Doctors think they're drunks or addicts. This 'warrior' fights so his disease is understood

KANSAS CITY, Mo. -- Kevin Wake has suffered three strokes. He is only 54. The first one taught him how humiliating an emergency room visit can be for Black people living with the blood disorder sickle cell disease.

It happened in Chicago, where the Kansas native was living in 1999. By the time he arrived by ambulance at the hospital he was immobile, unable to stand or speak.

“They started triaging me as Black male in his 30s who is either intoxicated or high on drugs,” Wake recalled recently.

All he could do was shake his head desperately. He finally caught the attention of a nurse and motioned he wanted to write something. “I scribbled three words, sickle cell stroke,” he said.

The assumption that he was a drug abuser, presumably because he was Black, “angered me,” he said. “But it also made me realize that … you can’t look at somebody and tell if they have sickle cell.”

Sickle cell patients and their advocates often feel unseen as they work to educate both the public and the medical community itself about the disease.

Though sickle cell disproportionately affects Black people in the United States, millions around the world suffer from it, from sub-Saharan Africa to Saudi Arabia, India and Mediterranean countries such as Italy.

In this country sickle cell patients are a relatively small band of “warriors” — the word often used to describe them. About 100,000 people in the United States have the disease, including an estimated 2,000 in Missouri and about 700 Kansans.

Patients tell of receiving substandard medical care because health care professionals don’t know enough about the disease. In recent months, Wake and other advocates have succeeded in getting legislation passed in Missouri that addresses those problems, and are working to get a similar bill passed in Kansas.

“I think the general sense is people know very little about it. Or if they know anything about it they know very little about how much it can impact not just the individual, but the family too,” said Donna McCurry, a senior nurse practitioner at University Health’s Sickle Cell Center.

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